Counsyl: Genetic Assurance only $349?

The story of the Lord family’s struggle with Tay Sachs disease in section 3 of the NOVA documentary was truly heart wrenching. Seriously, what are the chances? It is incredible how one letter in the genetic code can change everything in a families life. Towards the end of the segment, Tim’s pleas for the development of a test that screens for hundreds of genetic diseases, so that parents can be informed if their children are at risk. Apparently, that test is here, thanks to Counsyl (and ready to ignite a publicity blitz). As featured in a recent New York Times article, Counsyl is a start up company based out of Sillicon Valleythat claims they have developed a test capable of telling parents whether or not they are at risk of having children with genetic diseases. It is as simple as going online. For just $349 per person or $698 per couple (a real bargain compared to upwards of $250,000 worth of tests) , anyone can go to www.counsyl.com and claim the kit. At first glance, the online formatting appears to be showcasing a far less legitimate enterprise, claiming the process in “Quick, Safe and Secure”. Sounds a bit like a hoax. But what Counsyl is selling is far from a gimmick. Rather, the website is drenched in “values”. The company’s values are posted in the center of homepage and state, “We believe that genetic testing is a human right, not a luxury. We believe children deserve healthy lives, free from genetic disease. And we believe in universal access, especially for those most in need”. Chief Executive, Ramju Srinvasan notes, “Nothing is more relevant than making sure your child doesn’t die from a preventable disease.” While I’m careful not to forget that this test is the product of a money making business, I can’t help but think that these guys are really on to something. The notion of this test runs a series of “what if” statements through my mind. What if this test had been available to the Lord family? What if this test becomes a social norm….?

“Universal genetic testing can drastically reduce the incidence of genetic diseases, and may very well eliminate many of them.”

—Professor Steven Pinker, PhD Harvard University

While Counsyl’s product has the potential to save children’s lives and deter parent’s heartache, nothing comes without implications. The New York Times article states genetic counselors might become overloaded because so many people (35 to 40 percent) are carriers for at least one genetic disease. However, this does not mean the child will diagnosed with the disease. On a side note, I could probably write entirely different blog entry on the notion of genetic counselors, the profession fitting a need so new. Also, opponents fear that fewer children being born with these genetic diseases will consequently result in less scientific research for cures. But what many worry is of the possibility of what the Time’s article labels, “designer children”. Critics worry whether this test, or tests like it, will lead to children whose traits are hand selected by their parents. Making the worlds depicted in Gattaca and even Brave New World seem eerily close. But, not that close. I think the benefits of this test outweigh the disadvantages. The test’s goal is to prevent genetic disease not aid the creation of “perfect” children. Parents are not choosing blue eyes over brown; they are choosing life over death. I think the primary concern regarding this project should focus on accuracy. After all, this product is the result of a start up company. Will it succeed? Will it be bought by a larger genetic firm? The future of this company is unclear. Ultimately, Counsyl aims for this test become like the home pregnancy test. Will we one-day see genetic testing kits lining the shelves of CVS? I think there is a definite possibility.

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One Response to “Counsyl: Genetic Assurance only $349?”

Genetic testing is definitely a big issue and could be beneficial for diseases where early detection makes a difference in treatment options/survival. While Counsyl is definitely playing up to future parents’ emotions, many genetic disorders are untreatable and uncurable. If we design these genetic tests to look for these diseases during pregnancy and we discover babies with certain disorders, what are our options? Have a baby knowing they will have a disease or abort the baby, which brings up social and ethical issues.